Molly Watt Trust

I am registered deafblind, however, I was not born deafblind but deaf. What that means, to you, is that I was brought up a very visual child and like most deaf people I could lipread, observe body language and even converse using my hands and sight. I was not brought up using Braille, or voiceover and still today I know the most basic Braille, my choice and I still chose to use the tiny amount of vision I still retain.

For your information what I see is like looking through a straw, I'm sure you can try to imagine how challenging that is.

So when I am told and sent links by your "accessibility team" telling me to seek help in your help pages online you will understand that you have not enabled zoom so it is impossible to magnify anything so I can read it so naturally asking me to complete a form really is a thoughtless request and of as much use as a chocolate teapot!

Facebook is one of the most altered and cluttered apps and as yet I am waiting for the alteration that enables people like myself to actually access it the way others can, it just clearly isn't a priority to you.

In real terms what this means is you are knowingly isolating further an already isolated community and not just those with my condition or low vision but the elderly who want to reach out to others, to those confused by the cluttered fashion of Facebook. I know this isn't new news to you because I have blogged about this before!

It's not asking too much for huge corporates like Facebook to consider the accessibility needs of us all and yet it continues to fall on deaf ears.

The latest in the Facebook Book of "Accessibility Howlers" was delivered to me via twitter, which seems the only way you respond to anybody accept the time I was contacted by your London offices, by email via my charity and asked to give you a free presentation on accessibility - I think on reflection maybe I should have given my time for free to help vulnerable groups but, I too have to make a living!

Facebook decided to withdraw the 'boost post' facility from my Charity Page, a page where I would regularly share information within the deafblind community, the reason why, who knows? It asks, in the dreaded pop up box, for up to date payment details, had to have that read to me and guess what? My payment details are all up to date. Put in alternate payment details, won't accept those, so what is next? Of course, ask @fbaccess and guess what, you got it, they send a "help" link I cannot access because zoom is not enabled - so what is the answer, just ignore me, so far that is the only answer, nobody has contacted me, told me why I cannot boost any posts, re-enabled the facility so that's it - Facebook cares I'm told, well, really?

Is this really satisfactory accessibility from one of the biggest in social media, it's beginning to feel very much like Anti-social media!

You know, I would far rather work with these companies and help make everything accessible for those in need but Facebook remain unapproachable and inconsiderate.

I'm not asking for for 'super amazing brilliant' I just want fair access, zoom enabled and for somebody to sort out this 'boost post' facility so I can continue with my work raising awareness of Usher Syndrome, deafblindness, accessibility, assistive technology and all the other aspects of my work.

Maybe if I put this on my Christmas list it might get resolved or maybe Christmas will never come!

I have been asked many times what my favourite social media is and why and my answer is always Twitter.

The reasons I like Twitter are firstly from an accessibility view point. There is choice, there are several Twitter apps each offering something a little different and those little differences mean more chance of there being something that works for those of us with varying needs like blind but with low vision, hence able to access text if the right size, colour and contrast, bearing in mind biggest it not always best!

Twitter is an excellent platform for accessing and sharing information also for finding like minded people and for support.

Through blogging and networking mainly using Twitter as my favoured platform I have been able to reach out and communicate with people and companies I would never have met without accessible social media.

I have been quite overwhelmed on occasion that people from all over the world and from fields varying from technology, accessibility and healthcare have taken an interest in my work and remembered me in such a way that they post and tag me in things they feel may be useful or interesting to me and my cause which is quite incredible and I am very thankful of that consideration.

My passions continue to be to raise awareness of Usher Syndrome, it's many challenges, to recognise accessible and enabling assistive technology for those with sensory impairment and test if possible then share my findings.

Twitter is so easy to access, simple rows, easy to scroll up and down unlike my least favourite social media platform, Facebook.

I blogged a great deal about Facebook last year and I was very pleased to see the long awaited arrival of dynamic text for those of us with limited sight. That said they still have a long way to go to make accessibility easier for people like myself, particularly on mobile devices.

Facebook is very useful for specialist support groups, bringing people together, however if those who need the support cannot access it it becomes frustrating and quite a let down to many in need.

I remember there used to be more than one app for Facebook but that no longer appears to be the case, which is very unfortunate, we are all different and all like choice.

Facebook changes / updates regularly but remains very cluttered and hard to navigate.

It seems Facebook sees blindness as total and that voiceover is a requirement even though there are so many with low vision.

The low vision group would include the ageing. Then there are those with Usher Syndrome, deafblindness some who cannot access sound so voiceover not an option. These people are therefore reliant on accessing visually and it is very difficult amongst the clutter.

There needs to be options to invert / change colours at least.

If you can imagine looking through a straw and actually realising how little of a screen you would see at any one time then you can imagine the difficulty experienced on a cluttered screen, it's exhausting.

I guess frustration best describes Facebook and it's very disappointing as so many vulnerable groups rely on it to catch up with others when they cannot get out and mix easily.

Facebook make regular changes and I noticed are looking to make more improvements including describing pictures, which is great for those who need it but again won't help the deafblind.

I feel Facebook should be a friendly and easily accessible place for all to find friends or support groups, here's hoping this is coming too, until then its “Frustrating Facebook.”

I am very fortunate that I have access to quite a range of accessible assistive technology and all are mainstream products which really goes to show how far things have progressed for people with sensory impairments, however so many apps and websites have a long long way to go to allow full access to all.

I was delighted to see that at last Facebook allows dynamic text for those of us who use iOS and rely on it.

Finally those who had been isolated from family, friends and groups because of inaccessibility enabled.

Thank you Facebook for listening and acting appropriately.

I still find Facebook difficult as the layout is continuously changing, there's no option to invert colours and the page is generally very busy which is a navigation nightmare for those with low vision, in my case only 5 degrees of vision in one eye.

It seems unthinkable in this day and age with the technology available that this was not in place long, long ago and without people like myself having to voice our concerns of isolation as a result of inaccessible apps, groups or websites.

I use social media a great deal.

I have used it at my lowest times to reach out to others.

I use it to reach out to friends, to find friends, to share information and to learn about the things that interest, enable and enhance my life.

It is particularly useful for those like me who have a rare condition to reach out worldwide to find others, experiencing similar and looking for similar, to share and support each other through the many challenges Usher Syndrome puts upon us.

I find Twitter the best social media to do most things including raise awareness of Usher Syndrome via my Charity.

Another thing I like about Twitter is there is choice of apps to access it which is preferable particularly as the accessibility features vary from app to app.

I've tried twitter, echofon and twitterific on my iPhone.

Of these all three are free from the App Store.

My favourite of these and the most accessible for me is twitterific.

Once your twitter account is set up enable it on Twitterrific.

The initial set up was very fiddly but worth the fiddle.

I found the settings, eventually!

Press on your Twitter picture at the very top of the screen and at the very bottom of the screen just right of the middle is the settings button, where you can set a few things, however, I think, strangely the most important setting for me was not in settings but another button again at the bottom of the screen left of centre, press it and a drop down menu at the top of the page appears and here you can change the contrast, size and type of text, also change picture size, lineage and even change the contrasts to be light during the day and dark at night - brilliant accessibility in my opinion.

I like that the pictures are not affected with the inverted colours.

Viewing tweets is home and reading everything on your timeline is easy on the eye, great for me as I don't get the glare.

Home is indicated by a tiny house with a little dot underneath it at the top of the screen, next to it @ which has a little dot under it if you have been mentioned in a tweet and next to it a small envelope for your private messages, if you have any messages a little dot is underneath the envelope.

At the right of the screen is circle and quill press here to write a tweet, remember only 140 characters maximum per tweet.

At the bottom of screen are tiny camera, search, draft and location which you can use when tweeting.

Once your tweet is typed look to top right and press send and then go to far left to close and return to your timeline.

I like the contrasts on the home section (timeline) and also the mentions section but do find the message contrasts quite difficult.

You can also press search to find people to follow, usually people of interest.

These are the main things I use particularly for my charity Twitter account (mollywatttrust).

If once your account is set up there is something you don't like you can edit by again pressing your Twitter picture. You will again see the list I mentioned above, this time towards the middle but at the top of the page is another little button press here to see your profile details including how many tweets you've sent and received and at the bottom of the page in the middle press to edit your details, when edit completed go to top top right to close and press home to see who has been tweeting, if you see something you are interested in commenting on replying to, retweeting or favouriting, click on the piece you will then see an arrow left, that's to reply, a little box in the middle which is to retweet (share with your followers) star right of that to favourite the tweet, quite basic. On the far right is a small line of dots press this to see a discussion attached to any tweet and possibly comment thereafter or you can quote a tweet and add a comment above it - may sound complicated but really isn't once you've played around with it.

I do wish the settings were always at the top of the page, it's always the first thing we need to do and naturally where the eye goes to first - all this searching to set up is hard work for those of us with such limited vision.

Anyway once set up and after practice tweeting is a fantastic way of reaching out to others, reading and sharing information.

Tweeting is much easier to navigate on any of the three apps I have mentioned once you get the hang of it.

For me the layout of a page is so important, I prefer the lists in sections on twitter apps rather than the busy ever changing layout of Facebook.

The actual Twitter app is ok, fairly easy to set up if you are ok with the glare as if there is a way of inverting colours on the app I haven't found it.

The settings are just below your header picture, right of your profile picture so pretty obvious, better than Twitterific, press here to find the various settings, most important to me the place to alter text size, for me it should enable much larger to be really useful. Once settings set click done top right of screen to return to home screen.

Top right is box and quill to write tweet once tweet complete just above keyboard on right is blue box with tweet inside press to post.

Again there is search and camera on the left above the keyboard to use accordingly.

Interestingly, again the control features, home, notifications and messages along with "me" are at the bottom of the screen - press which ever you'd like to view.

I found echofon quite similar to Twitter but the text too small even on the largest available.

In short, Twitter easier to set up and use than twitterific but twitterific better and more aesthetically pleasing.

There are several other tweeting apps available and some available on iPad or MacBook but not iPhone - as each is a little different, varies in set up and layout I do tend to stick to the one once I have it up and running.

Having a choice is fantastic when you have quite specific accessibility needs, especially as each developer seems to have different ideas on accessibility.

I'm simply grateful when consideration is made for the blind or deafblind, in my case who still chose to read appropriately modified text.

Towards the end of last year I started communicating with Dan via Twitter. Dan was working with Radio 4's In Touch and was keen to get me on radio to talk about Usher Syndrome.

As Christmas got nearer we decided to look at doing something in the new year.

One of the programme producers was in touch by email and we discussed my needs and what I would speak about.

The date was set for Tuesday 20 January 2015.

The Radio 4 Studios are in central London, somewhere quite unfamiliar to me, it's busy and worse it was going to get dark! Fortunately my best friend Kyra knows me well and is brilliant at stepping in to help when I need her.

For me planning ahead is very important, however there are some things I cannot plan and that does make me anxious. I was concerned I would struggle to hear well enough to come across well.

Would the studio be dark, would there be bright lights shining at me, would the studio echo, would Peter White be too far from me for me to at least lipread a little, would I mishear - everyday concerns but when appearing live I was worried!

This is Usher Syndrome and I'm used to it but when I'm given the chance to raise awareness with a huge audience I want to get it right.

I should mention I did not have my new Resound Linx2 smart hearing aids back then. They have certainly made a huge difference to my ability to access sound in the more difficult and challenging situations as described above.

Thankfully I was very well looked after by the staff at Radio 4, I got to meet the inspirational Peter White and Dan, who deserves a huge thank you - THANK YOU DAN.

This blog isn't really about me but about "Accessible Social Media" and how powerful and in this case, positive and for me, quite magical.

Without it I would not have appeared on Radio 4 without it I would not have found Dan and without my radio interview about Usher Syndrome and its many daily challenges I would not have reached an audience of millions including the man that is Andy Gill.

Andy not only found Molly Watt Trust on Twitter but has kept in touch and supported the charity since then promising to run The Great Northern Run for us and even though he is a very busy man, he is doing it exactly that.

I have to admit when I read his bio (below) I felt very humbled and a deep pride that this wonderful man, a complete stranger not only listened and took on board what I had said but has been inspired enough to want to help raise awareness and fundraise for the Usher Community - thank you Andy, I hope to be able to come meet you and cheer you on in September.

Andy Gill's Full Bio

On Tuesday 20th January I was driving to Swindon from Alnwick in Northumberland and if I’m not listening to some music I would stick Radio 4 on. Not that I’m an oldie or boring but they do actually have some good material on there that can take you through 200 miles without you realising.

Now on this particular evening I listened to an article on “Usher Syndrome”….. Obviously at first glance you’re thinking the same as me, it’s for those people who don’t like Usher’s music but that wasn’t the case. I am not going to go into detail as it would be worthwhile visiting http://molly-watt-trust.org/ to gain a more thorough understanding for yourself.

I was touched by the content, by the delivery, the honesty, openness, and felt that I had just been educated on the issues people with “Usher Syndrome” can encounter. Bullying, coping with people’s naivety to what other normal looking people can suffer from, lack of support from multiple education factions, and more.

Molly Watt took me on a journey that evening that truly pulled at my heart strings.

I for one didn’t appreciate that this is a progressive condition, however, it doesn’t take a genius to realise that without the correct support network of family, friends, organisations and people like me who stumble across the Radio 4 programme that evening, that people living with Usher Syndrome are living a tough and challenging life.

If I can do anything that makes the slightest bit of difference to Molly, along with other people who have this condition, then I will certainly try my hardest.

On the 13th September 2015, I will be running the Great North Run. Now on my previous 2 attempts I was thwarted in my efforts to break the 2hour barrier by changing my running pattern accommodate 1) a friend who wanted me to wait while he had a pee that appeared to take 20 mins…. 2) to run with my lovely cousin who I must say did absolutely great and I thoroughly enjoyed it even though I shortened my stride and I probably ran the equivalent in steps of 20 miles. Anyway, 2 great runs and both of them were for Children With Cancer or CWC @CWC (Twitter).

Last year I had a ballot place which I deferred to this year as I had work commitments that meant I couldn’t make it. So, rather than run for a recognised national/global charity I asked Molly if it would be possible to represent The Molly Watt Trust and I was delighted to say Molly kindly accepted and has designed and made up a cracking running top which I will wear with pride. I probably won’t achieve sub 2 hours but a lack of true training, new born baby, lack of sleep, I love my food too have all contributed to me remaining “HEAVY”….. I will however enjoy the day knowing that this little run, yes 13 miles, may have generated some additional funding for The Molly Watt Trust and in turn people who have Usher Syndrome may benefit in some way.

Now, if you’re reading this you may want to support me and make a donation or even set me a challenge by stating you will give more if I achieve say sub 2hr 20min for example. Be realistic!

Whatever happens on that day, however much I can help raise towards MWT I will continue to look for ways to support Molly and her trust.

What I will also say is you don’t have to have met Molly to support her. I haven’t but I feel there is a need to raise awareness of Usher Syndrome and the issues these normal looking folk encounter on a daily basis that we all take for granted.

My Apple Watch After 5 days!

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I was prompted to write a blog on reading this quote:
“For people without disabilities,technology makes life easier. For people with disabilities technology makes things possible” (IBM training manual 1991).
That quote...